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terrified to get pregnant

Sat, 09/19/2009 - 11:59

Hello,

My name is Linzy and I am 26 years old. I was diagnosed with Absence seizures when I was 23. I have been on a boat load of medications to control them and now I am on Lamictal which has done the best so far. I have been increased recently because of some breakthrough seizures. My husband and I have decided to have a baby and I am terrified for the health of the baby. My doctor told me that Lamictal can cause cleft lip, palate etc., to the fetus and that I cannot breast feed. I take 125mg of lamictal in the morning and at night. I have always dreamed of having children - healthy children. I would love my child no matter what but doesn't everyone want healthy children, free of defects? I have also always dreamed of breast feeding. I was pretty devastated when my doc told me that I wouldn't be able to breast feed my child. I want to be able to have that connection with my baby. I guess I am just hoping for some similar stories and to know that there are people out there who understand where I am coming from and how much of an impact seizures can put on your life even if they are just absence.

 UPDATE (May 5, 2011): I thought that I would update this thread :) I am happy to tell you all that I am the very proud mother of a happy, healthy and totally normal 9 month old son =) I got pregnant shortly after posting this thread and my whole pregnancy and delivery was completely normal, problem free and most important of all, seizure free!! Towards the end of my pregnancy I did accumulate too much amniotic fluid but it wasn't a worry at all and my water ended up just breaking on its own 2 days after my due date which kicked off 21 hours of labor and 2 hours of pushing, to which I welcomed a very healthy 7lb 14oz baby boy (with the help of the vacuum because he was coming down at an angle and was a bit stuck!). He was pretty jaundice for a while because he ended up getting some of my blood during delivery but that went away within 2 weeks. He does have an undescended teste which is fairly normal in boys anyway and has nothing to do with the lamictal. He already had the first surgery to fix that and is doing awesome. I haven't had any seizures since before I got pregnant which is really awesome since I was having them fairly often. And which is even more amazing seeing as my soon to be ex-husband wanted a divorce right before we found out I was pregnant and wanted one even faster once we found out I was pregnant a week later. I ended up having to move 9 hours away back to my hometown while I was terribly sick with morning sickness. To go through all of that stress and not have a seizure is pretty awesome I think! I was really scared about birth defects and such when I was ttc but now I know how small of a chance those things are especially with lamictal and in the future if I find someone else to spend the rest of my life with I will have no fears about having more children. Thank you all for your support and for sharing your stories! I wish you all the best of luck!

Comments

Re: terrified to get pregnant

Submitted by Eternal_Howl on Fri, 2010-07-02 - 01:29

Smilz,

This is more a comment on your faith in healing. It is possible you have had a miracle, but often miracles come in more conventional ways. IE: the medication is working. Don't stop taking it. Or if you do, do it slowly, make people aware and if you had warnings before your seizures when they used to occur, take heed of them. For me, my miracle is finding a drug that can control my seizures pretty much 100%. I tried several and none woked. I was desperate by the time I tried the last one. Eureka! No seizure in 12 years, but after 18 months off my medication to see if I still had it (since I developed E when I was 8) and it appears I do. It is also possible that I had a drug-withdrawal seizure, but either way I got my miracle. Went back on the meds and my brain settled down again. Almost 4 years since my last seizure. So perhaps you have received a miracle - but it's one that needs caring for, so-to-speak. Those of us with controlled E, are very fortunate. But ALL of us with E, understand how fragile the balance of the body is. So it's perfectly normal to be terrified to get pregnant when you're living with it, or recovering from terrible bouts with it. These are great discussions.

Smilz,

This is more a comment on your faith in healing. It is possible you have had a miracle, but often miracles come in more conventional ways. IE: the medication is working. Don't stop taking it. Or if you do, do it slowly, make people aware and if you had warnings before your seizures when they used to occur, take heed of them. For me, my miracle is finding a drug that can control my seizures pretty much 100%. I tried several and none woked. I was desperate by the time I tried the last one. Eureka! No seizure in 12 years, but after 18 months off my medication to see if I still had it (since I developed E when I was 8) and it appears I do. It is also possible that I had a drug-withdrawal seizure, but either way I got my miracle. Went back on the meds and my brain settled down again. Almost 4 years since my last seizure. So perhaps you have received a miracle - but it's one that needs caring for, so-to-speak. Those of us with controlled E, are very fortunate. But ALL of us with E, understand how fragile the balance of the body is. So it's perfectly normal to be terrified to get pregnant when you're living with it, or recovering from terrible bouts with it. These are great discussions.

Re: terrified to get pregnant

Submitted by ola111 on Sat, 2009-09-19 - 20:59

Hi,

I live in Europe, am on Tegretol CR 400 and clonazepam. I have one of the best doctors in Poland and one of the best in Europe (in Paris, where they specialise in epilepsy).

When I asked about having children both of them reacted the same way: "Yes, of course, why not?". And then both said the same. That I would have to get off of my meds. And it took years to find THE combination and if I do that and get pregnant I will have grand mal seizures for sure. Each grand mal seizure "cuts" the air that the foetus should get, so each of them can potentially cause cerebral damage- and there are thousands of kind of diseases that your kid could get.

If I would get pregnant and stay on my meds, the meds would cause different kind of damages to the baby.

This was their opinion. They would say yes, but if you're ready to have a discapacitaded child.

Now my opinion is: what kind of mother would I be if it didn't bother me to give life to a baby that will have even moe problems than I do? It's not important that I would love him- of course I would- but I won't do something like this deliberately. It's cruel and extremely egoistic.

Now, this is my situation, with different meds and maybe different seizures.

As for breast feeding: you can't take alcohol when you breast feed, you can't eat stuff that your baby might be alergic to, etc. do you think that taking your meds would do him any good?

The reality is cruel and I realize I might be cruel when writing this words. It's just that IF in your case too the risk of a disease is estimated as quite high- would you do this to your baby just for your own happiness?

There are other ways to have children too. And this is what we are thinking about, my husband and I.

I apologise if I don't sound nice to you, it's a sensible subject for me because it hurts not to being able to have what you want.

Best wishes,

 

Ola

ps. I also saw women with epi giving birth to totally healthy children- but my doc would say that they were taking really small dosis of meds.

http://everybodycan.wordpress.com/

Hi,

I live in Europe, am on Tegretol CR 400 and clonazepam. I have one of the best doctors in Poland and one of the best in Europe (in Paris, where they specialise in epilepsy).

When I asked about having children both of them reacted the same way: "Yes, of course, why not?". And then both said the same. That I would have to get off of my meds. And it took years to find THE combination and if I do that and get pregnant I will have grand mal seizures for sure. Each grand mal seizure "cuts" the air that the foetus should get, so each of them can potentially cause cerebral damage- and there are thousands of kind of diseases that your kid could get.

If I would get pregnant and stay on my meds, the meds would cause different kind of damages to the baby.

This was their opinion. They would say yes, but if you're ready to have a discapacitaded child.

Now my opinion is: what kind of mother would I be if it didn't bother me to give life to a baby that will have even moe problems than I do? It's not important that I would love him- of course I would- but I won't do something like this deliberately. It's cruel and extremely egoistic.

Now, this is my situation, with different meds and maybe different seizures.

As for breast feeding: you can't take alcohol when you breast feed, you can't eat stuff that your baby might be alergic to, etc. do you think that taking your meds would do him any good?

The reality is cruel and I realize I might be cruel when writing this words. It's just that IF in your case too the risk of a disease is estimated as quite high- would you do this to your baby just for your own happiness?

There are other ways to have children too. And this is what we are thinking about, my husband and I.

I apologise if I don't sound nice to you, it's a sensible subject for me because it hurts not to being able to have what you want.

Best wishes,

 

Ola

ps. I also saw women with epi giving birth to totally healthy children- but my doc would say that they were taking really small dosis of meds.

http://everybodycan.wordpress.com/

Re: terrified to get pregnant

Submitted by linzysmith323 on Sun, 2009-09-20 - 01:10

You sound like you are taking your frustations out on me. I understand the risks, and I would never have a child knowing that major medical problems would occur. This is some information I found on this site. I have found more information on the subject and it has been more of the same.

In this study, of 564 women who received lamotrigine alone, 5 instances of isolated cleft lip or palate (not seen as part of any specific syndrome) were seen in the babies. This data gives a prevalence rate of 8.9 per 1000, which means that oral cleft problems may occur in 8.9 of 1000 women treated with lamotrigine monotherapy. This number is 24 times higher than the risk of oral cleft problems seen in babies from the comparison group used in the study.

This same article also states that breastfeeding while on lamictal is not recommended. I never said that I would breast feed while on the medicine against medical advice, I only said that I have always wanted to breast feed. I would NEVER sacrifice the health of a child for my happiness. I am a medic and I do understand the risks. I have three doctors that I have talked with about getting pregnant, my ob/gyn, my neurologist and my family practice doc. I know cleft lip/palate is a risk but it is also fixable with surgery and it happens everyday. When I said that I would love my child no matter what - I meant that I would love my child even if they were born with a cleft lip/palate because that is a risk. Not that I would just go blindly into a situation and decide to have a baby against serious medical problems and if that happened - love them anyway. Like I don't care about anything but my happiness.

I know it hurts to not be able to have what you want - I live it. I would be considered a high-risk pregnancy so that my doc could do a 3D ultrasound early on to check for cleft abnormalities. I was never told that I can't have children because I take lamictal - just that there are precautions and a higher percentage of children born to mothers who take lamictal have cleft lip/palates.

I intend on talking with my neurologist about my med and if there are any options as to a different med that would be safer while I am pregnant (and one that I could breastfeed on).

I merely posted on this forum to talk with people who are going through the same thing and may have advice or just a similar story. Not to shoot me down or treat me like I am a moron and a "cruel" person. Maybe you were trying to give some advice or "support" somewhere but I felt as though you were attacking me.  I am not on here to argue nor to have a debate - I just wanted to clear my side up if there were any misconceptions.

You sound like you are taking your frustations out on me. I understand the risks, and I would never have a child knowing that major medical problems would occur. This is some information I found on this site. I have found more information on the subject and it has been more of the same.

In this study, of 564 women who received lamotrigine alone, 5 instances of isolated cleft lip or palate (not seen as part of any specific syndrome) were seen in the babies. This data gives a prevalence rate of 8.9 per 1000, which means that oral cleft problems may occur in 8.9 of 1000 women treated with lamotrigine monotherapy. This number is 24 times higher than the risk of oral cleft problems seen in babies from the comparison group used in the study.

This same article also states that breastfeeding while on lamictal is not recommended. I never said that I would breast feed while on the medicine against medical advice, I only said that I have always wanted to breast feed. I would NEVER sacrifice the health of a child for my happiness. I am a medic and I do understand the risks. I have three doctors that I have talked with about getting pregnant, my ob/gyn, my neurologist and my family practice doc. I know cleft lip/palate is a risk but it is also fixable with surgery and it happens everyday. When I said that I would love my child no matter what - I meant that I would love my child even if they were born with a cleft lip/palate because that is a risk. Not that I would just go blindly into a situation and decide to have a baby against serious medical problems and if that happened - love them anyway. Like I don't care about anything but my happiness.

I know it hurts to not be able to have what you want - I live it. I would be considered a high-risk pregnancy so that my doc could do a 3D ultrasound early on to check for cleft abnormalities. I was never told that I can't have children because I take lamictal - just that there are precautions and a higher percentage of children born to mothers who take lamictal have cleft lip/palates.

I intend on talking with my neurologist about my med and if there are any options as to a different med that would be safer while I am pregnant (and one that I could breastfeed on).

I merely posted on this forum to talk with people who are going through the same thing and may have advice or just a similar story. Not to shoot me down or treat me like I am a moron and a "cruel" person. Maybe you were trying to give some advice or "support" somewhere but I felt as though you were attacking me.  I am not on here to argue nor to have a debate - I just wanted to clear my side up if there were any misconceptions.

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